POS0578-PARE IMPROVED EDUCATION IS NEEDED FOR INDIVIDUALS WITH SYSTEMIC LUPUS ERYTHEMATOSUS: INSIGHTS FROM A SOCIAL MEDIA LISTENING QUALITATIVE ANALYSIS
Authors: J. Barbosa, C. Henning, A. Mian, C. Harrison, E. Scott, S. Burriss
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Systemic lupus erythematosus (SLE) is an autoimmune disease affecting multiple organs, including the kidneys in lupus nephritis (LN) <sup>[1]</sup>. Individuals living with SLE have impaired quality-of-life compared with the general population <sup>[1]</sup>. and a growing number are using social media for health-related information <sup>[2]</sup>. Thus, social media is a useful source of data to examine their experiences and concerns <sup>[3]</sup>. <h3>Objectives</h3> To understand the perspective of individuals living with SLE/LN on their disease management and to assess where they seek information, how their personal perspective impacts their care, and what may be needed to improve care/experience. <h3>Methods</h3> This qualitative analysis used the Sprinklr social media listening tool to search historical posts across 11 countries, including the USA, the UK and Japan, between May 2021 and February 2022, using predefined keywords. Main data sources were Twitter, Instagram, Reddit, Facebook, Weibo and SLE-specialised websites. Publicly shared posts relating to SLE/LN were captured and key themes were analysed. <h3>Results</h3> Overall, 23,084 posts were exported; of these, 12,037 were in scope and mentioned SLE/LN disease and/or therapeutics. Of the 12,037 posts, 6424 were related to SLE/LN disease alone (diagnosis and management) and 5387 to therapeutics. The remaining 226 posts did not add any value to the analysis and were not considered. From analysis of the posts, many individuals with SLE/LN appeared to understand their condition and could identify symptoms (e.g., SLE: pain, fatigue, rash; LN: foamy urine, blood creatinine). However, there was a lack of knowledge of diagnostic and disease monitoring tests such as anti-nuclear antibodies. Individuals with SLE/LN also described not receiving enough explanation of their laboratory results. Based on the posts, physician focus on measurable disease activity and clinical trial data did not resonate with individuals with SLE/LN. Quality-of-life and patient-reported outcomes would be the preferred focus of discussion and may improve perception of their care. Individuals with SLE/LN reported being busy and symptoms of their disease (e.g. too tired or forget to take their medication) as reasons for poor adherence. According to the posts, the most used SLE/LN drugs included methotrexate, hydroxychloroquine (HCQ), prednisolone, mycophenolate mofetil and azathioprine. Individuals with SLE/LN generally had positive sentiment towards their individual standard therapies (except for HCQ). Awareness of long-term side effects was generally high; however, some individuals with SLE/LN were not aware that long-term use of steroids may contribute to organ damage. Individuals with SLE/LN reported many barriers preventing them from focusing on long-term goals of disease management and achieving better outcomes, including diagnosis delays, daily disease impact, concerns with treatment effectiveness, safety, onset of response, and due to misleading information on social media. <h3>Conclusion</h3> Insights from this analysis suggest that improved education for individuals with SLE/LN on disease-specific tests/tools, laboratory results, treatments, and treatment effects could improve shared decision-making, including a needed shift in focus from short-term to long-term improvements. It could also help address discordance between physicians and individuals with SLE/LN on medication decision-making and adherence <sup>[4]</sup>. It is vital to consider known health disparities when providing education, as barriers such as racial discrimination have been associated with increased SLE disease activity and organ damage <sup>[5]</sup>. A change in care and clinical trials towards more collaborative and patient-centric care could also improve adherence and outcomes. <h3>References</h3> [1]Anders HJ et al. <i>Nat Rev Dis Primers</i> 2020;6(1):7 [2]Dima A et al. <i>Lupus</i> 2021;30:12 [3]Stens O et al. <i>JMIR Res Protoc</i> 2020;9(8):1–8 [4]Sloan M et al. <i>Rheumatology</i> 2021;61(4):1417–29 [5]Chae DH et al. <i>Am J Epidemiol</i> 2019;188(8):1434–43 <h3>Acknowledgements</h3> Analysis funded by GSK. Medical writing support was provided by Helen Taylor, PhD, Fishawack Indicia Ltd, UK, part of Fishawack Health, and was funded by GSK. <h3>Disclosure of Interests</h3> João Barbosa Shareholder of: GSK, Employee of: GSK, christine henning Shareholder of: GSK, Employee of: GSK, Aneela Mian Shareholder of: GSK, Employee of: GSK, Carly Harrison Shareholder of: Aurinia Pharmaceuticals, Consultant of: Aurinia Pharmaceuticals, Novartis Pharmaceuticals, Ebony Scott Consultant of: Merck, Employee of: LRA, Susan Burriss Shareholder of: GSK, Employee of: GSK.